Day 365

12 whole months, 11+ different drugs, 10 scans, 9 cycles of chemo, 8 infections, 7 blood transfusions, 6 doctors, 5 hospitals, 4 cases of sepsis, 3 NG tubes, 2 PICC lines, 1 less ovary. (Oh and roughly 100s of blood tests, 97 nights in hospital, 52 PICC dressings, 15 nurses… the list goes on). If you think that’s a mouthful, you want to try reciting my drugs chart to a new doctor, which only becomes easy once you learn how to pronounce the 20 different drugs. I don’t know why the names were ever agreed, there isn’t a single medicine with a short, simple name. Except for calpol, and that’s not even on the list. This was meant to be a year update, but true to self I am late posting it by nearly two months, and have just finished my sixteenth chemo cycle.

What a year though. Some people ask me if it has been the longest year of my life, and honestly it hasn’t. I don’t know if that’s because I spent the majority of six months asleep or if time really does just fly! I wouldn’t change the past year for anything, obviously I don’t recommend cancer but it’s become a new normal for my family and I, and I can’t imagine having my old life back. EVERYTHING changes when life throws a spanner like this at you, but you either embrace it or let it ruin you. Thankfully, all the support and ongoing treatment I have received has allowed me to stay positive and really embrace this and it has even given me a story to tell, all be it a crappy one, it’s more than I had to tell before.

I look back at all that has happened, and sometimes I don’t even feel like it all happened to me. I know that sounds crazy, but I look back to see such a different person, (not in the way that cancer has made me ‘re-evaluate my life’ and I’ve come out a ‘new person’) but in the respect that everything I experienced was such a temporary version of myself. The bald head, the major weight loss, the immobility, ok maybe not the amount of sleep, but definitely the amount of sickness. And because time went so quickly, it was almost like I don’t remember it being as bad as it was. A year ago I was having my head shaved in a hospital chair, and today I’m sat trying to flatten down the bush that has currently grown out of control! But what a problem to have. So much can happen in a year. I never feel sorry for myself or think I’ve had it unfair (when I know full well I’ve had it tough) and I think the chemo brain has a major impact on what I do and don’t remember during it all. I’m aware I’m talking about cancer like it’s all in the past, but it really isn’t. The illness is still very much happening, but again it feels like another new ‘temporary’ now that I’m so much better and having a different kind of chemo. To me, the fact I can now even stand with my back straight is such a milestone, I can walk up the stairs without having to crawl, I can stand in the shower for 15 minutes instead of being bathed in my hospital bed, I can bend down to put my socks on AND get back up again, I can go shopping with my mum without the need of a wheelchair, and I can definitely watch TV without the fear I will never be able to stand up for as long as the presenter on telly can.

Our bodies are honestly incredible, what they are capable of in a time of need is just amazing. The way my blood levels always sprang back up in time for the next battering of chemo, how my legs have gained their strength back with gradual walking and weight bearing, without the need for physio. I had one physio session in hospital, and it was just awful. This works really well for some people, especially with specific injuries it can be so important. But it just wasn’t for me, I think my body just needed time to get back to being itself, it didn’t need to be pushed before it was ready. I hated the session, I was so poorly and low on energy, that I couldn’t think of anything worse than doing some walking and stretching. The guy (who was lovely and really knew his stuff) doesn’t have the best job, visiting patients in hospital who are less than willing to move out of bed. So I was conscious of making him feel like he had accomplished something with me, by trying to do every exercise and stretch all with a smile on my face. But as soon as he left I swore to the nurses they wouldn’t catch me doing that ever again. He then came back the next day whilst I was having a nap, and woke me up to ask if I’d been practising what he showed me. Obviously I hadn’t, so I just pretended to still be asleep. It was very cringe, him gently shaking my leg, me trying not to seem awake. When he left after I hadn’t woken up, I thought sod it, that’s the solution every time he returns. I think he got the message when I didn’t see him again.

I’m such a people pleaser it annoys the life out of me. I will sit and listen to tonnes of professionals and accept their attempts at helping me with whatever it may be. Even though half the time I’d rather be asleep. This characteristic has stopped me from asking so many questions, in fear of making them feel awkward if they don’t know the answer. Recently, a support worker came and assessed me, it’s something they do every few months to make sure there are no concerns regarding mental health, money, social life etc. I usually sit for about an hour for this discussion and modestly mark myself a 4 or 5 out of 5 for every category, especially if she’s caught me on a good day. Because I just can’t be arsed to go over any problems with someone, and most of the time I don’t need to. After she had finished, a nurse said to me “don’t you hate doing all that all the time?” And reminded me that I can just tell people no if I don’t feel like doing it. AS IF I would ever dismiss someone or risk offending them by telling them no, I’d rather put myself through the hour of misery for the other persons benefit and get their jobs done than reject someone!

The only recent drama to report, is my PICC line letting me down. To be fair, it’s done well so far, my first one I had in for 4 months until it got severely infected and almost killed me off. They said this was probably because it was in use 24/7 with the amount of chemo, antibiotics and fluids I was having through it constantly for those four months. I had it taken out and my life was narrowly saved, just in time for Christmas. After being PICC free for a week, I had a new one inserted in the same arm. I’ve already mentioned before how traumatic it was the second time around, but it’s lasted up until now without any problems. Two weeks before I was due to go on holiday (finally) it stopped working. It wasn’t flushing any solution through, nor was it drawing back any blood. After leaving a strong drug in the line to try and clear it of any possible clots or infections, it still refused to work. I was ready to have it taken out there and then, thinking of the freedom with outfits not being spoilt by an arm bandage, and being able to freely go into the pool without keeping it dry. The nurses were also trying to persuade me to, but it would mean submitting myself to a life of cannulas. That’s fine, because I don’t mind the pain of a needle, but the thought of a plastic cannula then being left in my hand whilst I received chemo was a nauseous thought. We left it a week, and tried leaving a stronger drug in the line WHICH WORKED. Thank goodness I hadn’t just had it out, as I still have a long way to go, and cannulas can become more difficult as your veins get worse during chemo. So it’s now working beautifully and they think there must have been a blood clot in the line.

New beginnings are so important, for everyone. I have so much planned for the next few months, scans, a new puppy, a holiday with my girlfriends, and it all gives me not only a reason, but also an excitement to carry on living. Thank you, always. For reading this waffle, sending me messages and praying for me. Your efforts and gestures are never wasted and give me more reasons to carry on. I have four scans coming up, so I’ll be back with my results, here’s to hoping they’ve improved so I can go on holiday without paying £1,000 for insurance.

X x daisy

 

 

 

 

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10 Comments

  1. Rob Lee
    October 14, 2018 / 6:24 pm

    Great to get a catch up and hope you enjoy your holiday with the girls. Best wishes Rob (from the blood donation team – now retired!)

  2. Kirsty
    October 14, 2018 / 6:32 pm

    Daisy you are so brave and such an inspiration

  3. Derek Freemantle
    October 14, 2018 / 8:00 pm

    Daisy it was lovely seeing you while we were in England,we thought your pixie hair made you look lovely and that smile would make ever body feel better.Hope you had a great holiday with all the family and are feeling OK after the long journey. You will continue to be in our prayers and thoughts and look forward to seeing you on our next visit.Love Uncle Derek and Aunt Joy

  4. Philip Simpson
    October 14, 2018 / 8:08 pm

    Defying all the odds and remaining cheerful is a lesson to us all and remains inspirational Dais.Hope the long awaited scan results reflect your perseverance to get on top of it. Great record of your progress informative and well written! xx

  5. Philip Simpson
    October 14, 2018 / 8:24 pm

    Inspirational as always Dais. Great record, informative and well written.xx

  6. Carol Brown
    October 15, 2018 / 8:20 pm

    Always an inspiration 😘 you are such a beautiful person x

  7. Alyson
    October 16, 2018 / 4:42 pm

    Another superbly written update Daisy……surely u must be close to writung book now ? Holiday photos are lovely ❤

  8. Elaine
    November 4, 2018 / 7:30 pm

    Such a beautiful girl with such a positive attitude will always win ! Sending you love from the Lennon’s xx

  9. Annie
    December 7, 2018 / 11:56 am

    Keep fighting Daisy. You are the bravest strongest person there is.

  10. Christine Packe
    July 18, 2019 / 8:36 pm

    What a truly beautiful girl inside and out keep on fighting and living you deserve every breath you take X

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